Unique systematic review defines patients’ engagement in research

Value in Health, the official journal of ISPOR-;the professional society for health economics and outcomes research, announced today the publication of results of an ISPOR systematic review and analysis resulting in a proposed definition of "patient engagement in research."

The report, "Defining Patient Engagement in Research: Results of a Systematic Review and Analysis: Report of the ISPOR Patient-Centered Special Interest Group," was published in the June 2020 issue of Value in Health.

After conducting this unique systematic review and qualitative analysis with patients included throughout the full research process the Patient Engagement in Research Working Group of the ISPOR Patient-Centered Special Interest Group proposes the following definition of patient engagement in research:

The active, meaningful, and collaborative interaction between patients and researchers across all stages of the research process, where research decision making is guided by patients' contributions as partners, recognizing their specific experiences, values, and expertise.

Clarity on what patient-centeredness and patient engagement mean in the context of health economics and outcomes research is increasingly relevant and a high priority for health economics stakeholders."

Rachel Harrington, PharmD, National Committee for Quality Assurance

"To this end, ISPOR established a working group to conduct a comprehensive review of existing definitions of patient engagement, patient-centeredness, and related concepts, with the goal of generating a robust, evidence-based, scalable definition of patient engagement fit for use in the context of health research."

To ensure an adequate identification and coding process, the group determined from the outset that a multistakeholder approach representing the perspectives of researchers (both academic and industry) and patients was required.

Accordingly, a study team representing all of these groups was maintained across design, methods selection, analysis, and interpretation.

"The role of patients as partners in health technology development has increased over the past decade, driven by the expectation of regulatory bodies, health technology assessment authorities, and patients themselves that patients' needs and priorities be understood," said Dr Harrington.

"Yet ambiguity on the definition of 'patient engagement' has been a barrier to fully implementing patient engagement in research. Clarity on what patient-centeredness and patient engagement mean in the context of health economics and outcomes research is increasingly relevant for members of ISPOR and similar research organizations."

The authors stress that several next steps should be taken to continue advancing the understanding and implementation of patient engagement in research.

Most pressingly, there is a need to determine how to operationalize, implement, and measure the success of patient-engagement initiatives across the health economics and outcomes research landscape and to learn from any challenges. Such an activity must account for what "good" engagement looks like from both the researcher and patient perspectives.